February 2016
Newsletter

Dear Friends,

You would all remember the recent Economist-Lien Foundation report on the Quality of Death Index. Following its publication, headlines in Indian media generally came out with the comment that “India is not a safe place to die in”.

Well, it is getting worse. Already we have the problem that even in the context of futile treatment or vegetative existence, people are subjected to intensive torture at huge physical, emotional, social and financial cost to the patient and family. Health care being poorly regulated in the country, institutions and practitioners are free to institute policies that would intensify suffering, even in the context of advanced cancer or terminal motor neuron disease. The prevailing legal environment worsens the situation.

The recent decision by the government of Karnataka to enforce 8% luxury tax on intensive care units would be one step that is going to worsen the quality of death in India. The link will show you how much every day of the dying process is going to cost purely in terms of money, living along other elements of suffering. And please note, this excludes the cost of medicines.

“Palliative care is a neglected issue in the Indian healthcare system, with few exceptions. The peer community – individuals, patients and their families, medical professionals, and lawyers – is sharply polarised in the discourse on the ethics of assisted dying or euthanasia in the Indian setting.” This is an excerpt from the editorial in the January 2016 issue of the Indian Journal of Medical Ethics (Vol.16, No.1), titled “Healing and Dying with Dignity: Where does India stand?” by Sunita Bandewar and Sanjay Nagral.

M. R. Rajagopal writes in “Access to palliative care: insights into ground realities post-2014 amendment to NDPS Act” about the history and current status of palliative care in India. “Often death is over-medicalised, and a system seems to have evolved in which a lot of people die in intensive care units on artificial life support even in the face of obvious futility of treatment, without the ethical alternative of withdrawal of artificial life support and introduction of palliative care. While death was preceded by the withdrawal of artificial life support in up to 90% of cases in intensive care units in the USA, the Indian figure for the withdrawal of life support among cancer patients was only 29%.”

In “The caregivers’ point of view“, Sheela Jaywant looks at the caregivers’ role in taking care of the patients. “The disabilities brought on by illness can force the dying into a position of complete dependence. Their quality of life can be so poor that they might actually prefer to leave this mortal world rather than linger on in a sub-human life, and the family might feel the same way. The helplessness of caregivers, who are generally family members, stems from extreme economic adversity as well as the insensitivity of the healthcare system.”

This issue of the journal is devoted to palliative and end-of-life care, and presents five papers which together offer insights into the complexities of the subject from ethical, legal and medical perspectives against the backdrop of the Indian healthcare system and the entrenched inequities in peoples’ access to healthcare. The authors of these essays have been part of the processes involved in shaping key policies, programmes and laws on these issues.

In a development that some see as a step towards euthanasia, France’s parliament on 29 January 2016 passed a new legislation permitting terminally ill patients to receive deep and continuous sedation till death.

The way the news is projected gives cause for concern. Palliative sedation is generally considered ethically right and part of good palliative care, though limited to extreme situations. Will those providing it be seen as clandestine practitioners of Euthanasia?

A group of volunteers including palliative care activists and artists is organizing an exhibition and sale of paintings and craft products. This 4-day event, Manjuthulli, will take place from February 4, 2016 to February 7, 2016 at Museum Auditorium, Trivandrum. The program will be inaugurated by Shri Soorya Krishnamoorthy at 3 p.m. on 4th February.

Part of the funds raised from this program will be used to support Pallium India’s patient care activities.

We request your presence and support for this event. Your contributions will go a long way in improving the life of people with chronic and life-limiting diseases.

On January 15, 2016, as part of Kerala Palliative Care Day programs, Pallium India’s new initiative, “Paint a Room” was inaugurated by Deputy Mayor of Thiruvananthapuram, Adv. Rakhi Ravikumar, at Manaveeyam Veedhi, Thiruvananthapuram.

Pallium India cares for several people who are bed-bound. Their lives are confined to the four walls of their room. The sights that some of us take for granted – of nature and her astounding creations – are denied to them, for they may not even have access to a window. Our intention is to make a small difference in their lives, if we can.

With the ‘Paint a Room’ mission, we try to understand their interests and what makes them happy, and paint those pictures on their wall, with colours they find pleasing. Will it make their lives more pleasant? We certainly hope it does, at least a tiny bit.

This activity was kicked off with support from friends and well-wishers of Pallium India. But to keep going, we need support from each one of you as well. Will you help us? Please contact us to know how you can.

Kerala Palliative Care Day is celebrated across the state every year on January 15. This year, the focus of palliative care day was on “Knowledge and Compassion for Quality Care”. Several programs were conducted by palliative care enthusiasts to increase awareness on palliative care and to improve access to essential medicines for the needy.

To see more pictures of the program at Manaveeyam Veedhi, please visit our Facebook page.

All palliative care nurses can take pride in the fact that the founder of the hospice movement, Dame Cicely Saunders, had started out as a nurse. Two of her followers were recently honored in Kerala.

Smt Radha was in government service in Thrissur. She had started out as a staff nurse and retired as the District Nursing Officer in 2001 after 33 years of service. Her humane service stood out as a beacon and helped as a guiding light to a lot of younger nurses. After retirement, she is more active than ever as a volunteer at Pain and Palliative Care Society, Thrissur. On 17 January 2016, at a function organized by the ATMA foundation (www.atmafoundation.org), Sri Therambil Ramakrishnan (honorable MLA) and Smt Ajitha Jayarajan (honorable Mayor of Thrissur, herself a volunteer in palliative care) honored Radhedathi (as Smt Radha is fondly called). It was Pallium India’s privilege to be present at the event.

Rev. Sr. Elizabeth is a super woman. With the help of two trainee nurses, she manages a large establishment with about 50 inmates, the majority of them destitutes and many of them requiring palliative care. Pallium India is privileged to be associated with Karunya Vishranthi Bhavan where she works and to provide medical support for their palliative care patients. On 20 January 2016, Sr Elizabeth was honored by K.C. Vamadevan Foundation with the prestigious K.C. Vamadevan award. The award was presented by Sri Adoor Gopalakrishnan at a function in Trivandrum.

Pallium India has been adjudged the winner of the Palliative Care Award for the SAARC Countries 2015-16 instituted by Cancer Aid Society.

The award and the prize money of ₹ 100,000 will be presented during the inaugural function of the International Conference of Indian Association of Palliative Care (IAPCON) on 12th February, 2016 at Pune.

Cancer Aid Society is an India-based non-governmental organization working on a variety of areas including palliative care, advocacy, tobacco control, and disease prevention, and holds a special consultative status with the United Nations ECOSOC.

Dr M. R. Rajagopal, Chairman of Pallium India, received the Pratheeksha Award from members of Pratheeksha Charitable Society on Kerala Palliative Care Day, January 15, 2016, in honour of his contribution to the palliative care scene in India.

Pallium India activists Ms Ashla Rani and Dr Siju Vijayan were among the invitees at the annual Republic Day dinner hosted by Shri P. Sathasivam, the Honorable Governor of Kerala, at the Raj Bhavan on 26th January, 2016. It was heart-warming to see that they were included in the guest list, whichh was otherwise comprised of ministers, senior IAS officers, officers of the Armed Forces, and social and literary luminaries. The Governor personally gave Ashla and Siju gifts and also gave a handsome check of donation to Pallium India.

We bow before you, Your Excellency, the Governor of Kerala, Shri P. Sathasivam.

In the presence of Sri Devendra Fadnavis, Chief Minister of Maharashtra, Union Minister for Transport Sri Nitin Gadkari and many other dignitaries, the palliative care center in NKP Salve Institute Of Medical Sciences And Research Centre and Lata Mangeshkar Hospital, Nagpur, was inaugurated by Dr Prabhat Nichkaode, Professor of Surgery and Coordinator of Palliative care, on the 24th of December 2015. This center is started under Pallium India and Jamshedji Tata Trust Project “Improving Access to Pain Relief and Palliative Care in India”.

A training session was conducted on the 23rd of December for faculties by Dr Navin Salins of Tata Medical Center and Dr Prabhakaran Nair of Pallium India.

Dr Kajal Mitra and Dr Nichkaode deserve special mention for the untiring support given to us in making the palliative care center a reality.

It is curious that the Middle East does not have much palliative care – curious because in the rest of the world, though it is a relatively low-cost affair, palliative care access is best in affluent countries. The Middle East has no dearth of money; yet there is a vast ocean of health -related suffering.

Let us forget the possible reasons. Some good things seem to be happening, with the Universal hospital in Abu Dhabi, UAE, taking the lead. On 22 January, 2016, a one-day palliative care educational program was organized by Dr Shabeer Nellikode and team, with Dr Sakshi Sadhu acting as the anchor. The faculty included doctors and nurses from UK, USA and India. Notable luminaries were Dr S. H. Advani, the famous oncologist from Mumbai, Dr Simon Dein from the UK and Dr Haroon Choudhri , who was named one of the top ten doctors in USA.

At present, the Tavam Hospital at Alain, UAE appears to have the only effective palliative care unit in the whole country. As in every other country, UAE has its own multiple barriers to access to pain relief.

Best Wishes to Dr Shabeer Nellikode and team for creating a sea change by bringing in palliative care to change the health care scene for the better.

In 2006, as Head of NHPCO, Dr Connor worked with Pallium India and 16 palliative care pioneers from various parts of the country to develop the minimum standards in palliative care (which can be seen at: http://palliumindia.org/about/standards/)

Congratulations, Dr Stephen Connor. And Best Wishes to you in your new role.

Asia Pacific Hospice Network (APHN) has launched a new initiative – a pilot education program for palliative care workers in the Asia Pacific regions. The first such program, a trial run, took place at 2.30 to 3.30 p.m. IST on Wednesday the 27th of January. Dr Odette Spruyt gave the first talk, summarising the global regional and country status of palliative care in the Asia Pacific Hospice Region.

Among the various topics that were discussed, to us the most exciting recent event happens to be the World Health Assembly’s resolution on integration of palliative care into health care. Efforts are under way for implementation of the resolution by the World Health Organization. The world over, palliative care activists are working together towards it. The Non Communicable Diseases (NCD) Alliance has been one strong force persuading action. Whether it be the area of opioid access, palliative care education or creation of policy and its implementation, the WHA resolution could be a strong tool for palliative care activitists in their attempts at persuading government action. In recent months, a country NCD alliance is developing in India. Perhaps, this could be an effective forum in every country. When different organizations in different areas connected with NCDs come together, the collective strength can be considerable.

The PAIN: Clinical Updates from the International Association for Study of Pain (IASP) November 2015 issue is worth taking a look at for any doctor, particularly those interested in pain management and palliative care. Though not new knowledge, the risk of respiratory depression with these two medicines is not adequately known. Either drug by itself, in clinically used long-term dosage schedules, is unlikely to cause respiratory depression. But that is not true for a combination of the two.

Sleeplessness is a common problem for people in pain and hence, physicians are tempted to combine the two medicines. The risk of respiratory depression must be remembered particularly when one of them is introduced for the first time with the other, or when the dosage of one of them is increased.

As untreated, excruciating pain is a common problem in palliative care clinics in India, it is not an uncommon practice to treat a pain crisis with an initial parenteral titration of opioids. We would like to point out that this practice along with concurrent administration of Benzodiazepines is particularly prone to respiratory depression.

The risk is believed to be more in the combination of Buprenorphine with Benzodiazepines.

We would also like to add from personal experience that rousability is not an adequate index of safety. In the presence of opioid Benzodiazepine combination, a patient who is rousable and breathing normally when awake can still drop off to respiratory depression in the absence of stimulation.

A study published in the Annals of Family Medicine by Jeffrey Scherrer et al. points out an incidence of new onset depression of 9-12% with medical opioid use, the incidence rising with duration of use. The risk is seen in those who use it more than 30 days.

There has been significant publicity for this as well as other risks. Would not the following be a balanced approach?

to be aware of the possibility of depression with prolonged use and to look for it and treat it if it happens,

to avoid using opioids as first line treatment for non-cancer pain, and nevertheless,

to use opioids when it is indicated instead of condemning the person to pain when nothing else helps.

“It just awes me when someone who is in such pain or is constantly taking care of others still makes it a point to ensure our comfort as a guest in their home,” writes CJ, a student from Iowa University who visited Trivandrum in December-January. The students took part in Pallium India’s home visit programs, and recorded their thoughts in a blog run by Professor Jo Eland.

“Family is so important and drives almost everything people do here. If a family member falls sick, then the family will quit jobs and do whatever it takes to stay home and care for their loved one. Caring for the sick is mostly left up to the women and today we saw daughters, granddaughters, daughters-in-law, sisters, and female neighbors all play a role in patient care.”

For most of us at Pallium India, seeing everything through the eyes of these students is a learning experience too. Please read all the blogs at http://elandphoto.com/India_2015/

Every year, a team of students from Iowa University, accompanied by their Professors, Dr Jo Eland and Dr Ann Broderick, visit Pallium India. In this cultural immersion course spanning three weeks, the students will learn palliative care in relation to health care in the country, and contribute what they can.

Dr Ann Broderick, Director of Palliative Medicine at University of Iowa, writes about Pallium India’s Wednesday outpatient clinic at Murukkumpuzha, and the volunteers, the patients and the family members who come together and support each other.

Above the sound of the call to prayer in Murukkumpuzha, a group gathers and chats in the public library on the second floor. Wednesday is outpatient day and those who can climb the stairs come and visit with the Pallium India team – nurse, doctor, social worker and volunteer.

Here, they will get an assessment of their social situation, their symptoms and refills of their medications.

Many healthy appearing women are in clinic on this day. Their husbands or fathers have been injured through accidents either in India or in Gulf countries. Or the menfolk have had strokes and cannot make the trip to clinic. The women serve as ‘proxies’ – reporting symptoms and getting some support for the hard work that they do at home, in addition to their wage earning jobs.

Pallium India’s website has a directory provided by our information centre. You will find a map of India and a list of its states. Click on the state (either in the map or in the list) and you will find a directory of palliative care centres in that state.

We shall also be grateful to anyone who can help us to update it. Do you know of a palliative care centre that is not included in our directory? Please write to us. The information you provide may well save a lot of suffering for someone in pain!

Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.
If you are interested, please write to us: info@palliumindia.org

We are happily accepting toy donations for our weekly children’s palliative care clinic. Certain specifications need to be considered before sending the toys across, due to the nature of the children’s illnesses.

Kindly avoid toys with small breakable parts, anything with batteries, toys with sharp edges, regular sized Lego pieces, jigsaw puzzles with small pieces, games involving liquids (like the ones that shoot rings onto sticks at the press of a button), stuffed toys that have fine hair and fluff, etc.

If you are interested in sending something across, do call us (+91-9746745497) or write to us:info@palliumindia.org. Thank you very much!

“Rini would attempt to sit down one moment, fail, and try to stand up, but then would bend over to a side, her body totally refusing to obey her will……. Still bent over, she crawled to the bedroom and tried to lie down; but failed. Her body arched backward like a bow, the small of her back on the edge of the bed and her head almost touching the bed.”

In their narrative “Pain in Bali” published in the Journal of Pain and Palliative Care Pharmacotherapy, authors M. R. Rajagopal and Kurnia Ito describe how mindless regulations and near-total lack of pain education combine to inflict needless cruel suffering on people with life-threatening diseases.

Kurnia Ito adds a possible reason, “It seems easier to get people interested in cute cats than in terminally ill people in pain!”

Read the free access article “Pain in Bali” in the Journal of Pain and Palliative Care Pharmacotherapy.

Don’t you have a story in you? Do please write your story on pain, suffering or relief and share it with the world. It will help your wound to heal by sharing and help others by giving visibility to the issue. Read about the narratives feature and other narratives.

Bhagwan Mahaveer Cancer Hospital and Research Centre (BMCHRC) and Pallium India join hands to conduct a three-day refresher course in palliative care for doctors and nurses. This course is open to any doctor or nurse who has already taken the IAPC course or other hands-on courses of not less than ten days duration.

PARTING SHOT

Dr Ramesh Menon, who coordinates Pallium India’s international council and is an anesthesiologist who lives in New Zealand, writes about the pain management situation in India.

“A sad revelation came when I spoke with a cousin living in Chennai and a carer for her 75 y old mother. This beloved aunt suffers from progressive dementia and now seems to have an acute and increasing vascular occlusion of both her lower limbs. From pictures my cousin sent me, she has obviously lost a toe or two to gangrene and is at risk of losing an entire foot. She wails periodically and has lost her mobility. My cousin is beyond tears and despair.

My cousin did not think it relevant to ask my advice until now. She perhaps did not expect an anaesthetist to help where a vascular surgeon (a Professor, no less) couldn’t?

I looked through the list of drugs the surgeon prescribed- treatment dose LMW heparinoid (which has resulted in bruising all over), aspirin, xanthinol, cilostazol, statin and so on. All prescribed in the genuine hope that the blood flow would improve and the critical ischaemia overcome. Not one pain killer was on the list! Her gangrene continues to progress meanwhile.”

The sad truth is that this situation is very common in most parts of India. Many patients are left to suffer even there are solutions at hand.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.